Woman in shadow, with her arms spread open, explaining her diagnosis to two people sitting on a couch.

About 6 in 10 Lupus Patients Constantly Have to Explain the Condition

Last updated: January 2022

It can be frustrating to explain lupus over and over again to people who simply do not understand. This can lead to simplified answers to save time and energy. Our 2nd Lupus In America survey revealed that almost 6 in 10 patients feel they always have to explain their condition to people who don’t understand.

The survey included responses from 836 people living with lupus, including 592 people who are older than 50.

We asked our Facebook community, "How does everyone explain lupus to people who don’t know or understand the condition?"

Simplicity is key

"The simplest way I have found is to say, 'My body attacks itself. And that brings on all kinds of pain, fatigue, and hundreds of symptoms from fighting that war.'"

"It's a disease that attacks every organ of my body, leaving each day uncertain."

"My body hates me and attacks just about everything and what lupus doesn't get the medication's side effects will."

"It's a horrible disease that steals your life."

"It's like being allergic to yourself."

"I tell them my immune system is always fighting with the rest of my body."

"An unpredictable disease basically my immune system is confused instead of attacking the invaders it attacks me. The end."

"On a 'good day,' you feel like you have the flu."

Some stopped explaining lupus all together

"Sometimes you can't. Don’t worry about others. Just do your best to focus on you and your health. If you can't get up and clean the house or cook a big meal, don't beat yourself up..."

"I kinda don't anymore...Some people can only understand certain things from their own perception if that makes any sense. It's like if they can't SEE the problem, then there's no problem...🙄  So wrong."

"Save your energy. No need to explain."

"I don't even try. Unless they are going through it, they will never understand. :("

"Hard to explain unless you have it. People don't get it! You look good on the outside, but it doesn't feel that way on the inside. Most definitely an invisible disease!"

"I don't waste my time explaining to people who don't understand."

"Find a good lupus site and tag them. Google is free and readily available. If they don't care to educate themselves, I'm not going to bother."

Shining a light on lupus awareness

"Depending on the person, I will get technical and medical or I will stick to basics. Awareness is needed. I'm not embarrassed. A little knowledge doesn't hurt. I start out with 'it affects everyone differently. People can hide it and sometimes we can't. Awareness is key."

We hope that learning how others handle explaining this condition to others validates your frustrations throughout your journey with lupus. We are so grateful for your insight and advocacy in this space. It creates awareness for others who are new to lupus or supporting a loved one with the condition.

The Lupus In America 2021 Survey was conducted online from February through March of 2021. Of the 836 people who completed the survey, 592 were 50 years or older, 95 percent were women, and 5 percent were men.

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